meeting with cardiologist

[leine]

so, finally I had my meeting with my cardiologist today and he convinced me to keep waiting with the surgury. I would be really curious to hear your opinion about my congenital AR with some aortic stenosis.

Here are some details about my 'state of the heart': I only write down data which are not 'normal'

I have very little symptoms and still can bike and play softball without problems.

Mitral valve:
There is reduced mitral leaflet excursion due to impingement from the jet of severe AI.

Aortic valve:
There is a systolic leaflet doming c/w congenital aortic stenosis. There is a malformed aortic valve. The peak trans AV gradient is 69 mmHg. The mean trans AV gradient is 39 mmHg. The aortic valve area is 2.7 sqcm. There is evidence of severe aortic insufficiency by color and spectral Doppler. There is flow reversal in the descending aorta. There is no evidence of coarctiation of the aorta. The ascending aorta diameter above the sinotubular junction is 35 mm. The diameter of aortic arch is 28mm.

Left ventricle:
The left ventricular cavity size is mildly dilated. The left ventricular systolic function is within normal limits. There is symmetric left ventricular hypertrophy. No segmental wall motion abnormalities. The estimated ejection fraction is 64%.

Pulmonary valve: There is evidence of trace pulmonary insufficiency by color and spectral Doppler.

LVIDd: 56 mm, LVIDs: 38 - I suppose that means LV end-diastolic and systolic dymension.

I would really like to know what you think. I compared the result of the last echo with previous data (from the last years) and essentially they seem to be unchanged. I plan to wait until the AR gets worse and then go to surgery. Since I am still not really confident with all the data on my report, I might have missed an important one - please let me know what you would like to know.

Thanks a lot! I am so glad I found this forum!

 

[leine]

collection of ultrasound,etc results

collection of ultrasound,etc results

hi,

might be a good idea to collect the cardiac ultrasould data,etc. from people in the forum (of course only who wants to give them) in a special thread or folder. So they could get discussed and I think it would be very helpful for a lot of people.

What do you think?

 

[ALCapshaw2]

Hmmm....

You aortic valve gradients are certainly elevated, but I don't know the 'trigger levels' for recommending surgery.

I am also somewhat confused because your Aortic Valve Area (2.7 sq cm) way larger than the usual 'trigger' for surgery (0.8 sq cm or thereabouts). With that large of an opening I would NOT expect such high gradients. Either something is missing or perhaps there is an erroneous reading.

It would NOT hurt to get a second opinion, preferably from a SURGEON since surgeons tend to like to operate before there is any permanent damage to the heart muscles and walls. Note that first time surgeries are Highly Successful (98%) so the benefit / risk ratio favors early intervention for first and even second surgeries.

'AL Capshaw'

 

[francie12]

For what it's worth, your diagnosis and numbers are very similar to those of my son. We are confident about staying in waiting mode based on the opinions of both his cardiologist and geneticist. Good luck!

 

[leine]

dear francie - my test results didn't change very much over the last decade - excecpt for my last echo where I was diagnosed with severe AR (instead of moderate-severe; however, these classifications from the technician are somewhat subjective and based on the Doppler result). I hope that the same hods true for your son. I am now 27 and still pretty much asymptomatic. However, I know that I have to prepare myself for the upcoming AVR.

All the best for your son!

 

[Philip B]

Monitoring

Monitoring

I manage to make it for twenty-seven years without seeing a doctor after being told I needed immediate AVR surgery and when I finally had surgery I was still not presenting any symptoms. This isn't in any way a recommendation to ignore a life-threatening condition.

My experience with that cardiologist twenty-seven years ago got an immediate negative response from both my cardiologist and surgeon when I recounted the experience. Both indicated that their preference is to have patients keep their original parts as long as possible. Of course, both were somewhat negative about me avoiding having the defective valve monitored for twenty-seven years. Things came together in my favor as problems with my aortic valve and aorta were fixed before I managed to have any permanent heart muscle damage.

Having the condition monitored on a regular basis is important. It's also important to continue to engage your cardio doc in dialogue about where you are in regards to what will trigger recommendations for surgery.

-Philip

 

[WayneGM]

Don't have much to add other than echo the need to monitor regularly. I was asymptomatic with mitral valve regurg. When first diagnosed, my Card thought I would need surgery sometime in the future, perhaps 5 years or so. As it turned out, the regurg progressed more rapidly than expected and I had my OHS within 18 months. I was still pretty much asymptomatic right up until surgery.

 

[catwoman]

When is your next echo scheduled?
Have you had a TEE yet?

 

[francie12]

Leine--Thanks for making my day by saying that you stayed for a decade at mod. regurg! Although in the three years we have been monitoring my son's heart issues he has gone up from mod. to mod./severe AV regurg, we are still hoping to hold out for that decade at least (monitoring carefully, of course). Sounds like you were diagnosed around the age of 17 or so. Good that you were able to stay in waiting mode through HS and college. Though reading the experience of young people here, surgery seems to be a hurdle that can be crossed and then a student's life resumed. I'll be following your posts and rooting for you!

 

[leine]

@ catwoman:I had no TEE yet, and I plan to go to my next echo in about 6 months, but I am not sure yet, because I am moving and have first to find a job and a new cardiologist. I could ask my cardiologist about a TEE - that probably would be a good idea. Is it painful?

@francie: I was diagnosed when I was 2 years old, but I can't remember my earlier test results - I have to ask my old doctors about them (before I entered college). However, as long as I remember, the answers from my doctors were that my AR didn't change very much, but that I should be prepared for a surgery when things get worse. That's me now and 10 years ago - in waiting mode for surgery. I am happy that I could procede through my education (college, PhD, postdoc) without surgery. I will probably move to the UK for a 2nd post-doc (I am a chemist, post-doc = temporarily research assistant position) and then apply for permanent positions at european universities. This means I try to plan a 'normal' life, but when my situation gets worse, I know that I have to make a break for some months. I am writing these lines to give you a single exemple that my 'severe' heart disease didn't influence negatively to progress of my professional life and personal life (I married a wonderful wife last year here in boston). However, I try to 'hear' my heart and avoid stress as much as possible. If I feel tired, etc. I have a rest, and I go the an echo every 6 months if possible, and ask my cardiologist whatever is unclear to me.

All the best for you son again!

 

[Adrienne]

Leine, you asked if a TEE is painful. Well, let's put it this way: no, it is not painful, and they give you a sedative. However, the stuff you have to swallow to anesthesize your esophagus is not exactly yummy. I won't go on because not everyone reacts like I did, and I don't want to discourage you.